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Saturday, December 31, 2011

The last few months of 2011 were hard. It's made me glad that 2011 is over, despite all the good times from earlier in the year. Those good memories all seem so far away. Thank goodness for this little blog that allows me to travel back over those good days.

I have been contemplating lots of things today... One of them being this blog. Am I done with it? Has it served it's purpose? Is it time to let it go? No decisions made yet.

Do you make resolutions? I was reading What I would tell you and have decided to embrace her idea that we already have enough on our 'plates' to worry about making resolutions. Everything she mentions in that post rings so true. I wish for all those things.

I've also been thinking about what I want out of this year.

I'm not calling them resolutions because that just seems like you're setting yourself up for failure but there are things I want. I want to be healthy. I want to be happy. I want to figure out what makes me happy. I want to be a good example to my girls. I want to spend good quality time with my family. I want to make date nights more of a priority. I want to worry less. I want life to be simple. I want, I want, I want...

Thursday, December 29, 2011

After all the Christmas crazies the past few days have really slowed down.

It's felt really good.

Christmas is always busy. We're off to Damian's parents on Christmas Eve, Christmas day we have family here and Boxing Day we're at my Dad's. It's three fun filled days of Christmas, family, presents and eating!!

Over the course of those three days the house takes a beating. It doesn't seem to matter how clean you get it before Christmas, it's a complete disaster by the 27th. An overwhelming disaster.

Of course, you have to take pleasure in some of the clean up since it means finding new homes for all the new treasures! You know you're spoiled when this becomes a daunting task!

The kitchen is still... hmm what's the word.... FULL. The counters are still covered in baking and sweets and the fridge is full of leftovers (most headed for the freezer because by then I'm done with turkey for a while!)

With a family of five, despite having laundry all caught up on the 24th, by the 27th we're behind about half a dozen loads!

It finally feels like we've gotten a grip on the situation. I can't take much any credit for it as I've been back at work the past two days.

The quiet days at work have been a nice switch from the quick pace of the holidays... and I never thought I'd say that!

Saturday, December 24, 2011

I've seen a variety of Christmas surveys floating around in the bloggy world lately. I thought it looked like fun and maybe you'd like it?

1. Eggnog or hot chocolate?

Hot chocolate for sure. Add a splash of Bailey's or some peppermint falvour on those special days.

2. Does Santa wrap presents or just sit them under the tree?

Santa leaves unwrapped presents in front of the tree.

3. Coloured lights or white lights?

Damian really likes the multi coloured lights and I've always liked the 'one colour' look. We compromised and for years we had blue lights on the house and multi coloured lights on the tree. Three years ago when we moved here we didn't have enough lights to line the front of the house properly and have since purchased multi coloured lights for outside and now have white lights for our tree inside. All that being said, with the chaos of our fall 2011 there are no lights on our tree or house this year!

4. Do you hang misteltoe?

Yes we do. In a high traffic area even... muah!

5. When do you decorate?

I like to try and decorate the last weekend in November. We managed to get the tree up early enough in December this year but with Caelan in the hospital I only put up most of our decorations this past Monday (December 19th at 4 o'clock in the morning!).

6. Do you open gifts on Christmas Eve?

I grew up opening only one gift on Christmas Eve - always a new pair of pajamas. That's a tradition that we continued with our kids. However, we also celebrate Christmas with Damian's family that day/evening and despite Gramma's protests over the years, we have started opening our gifts with them then too.

7. Snow. Love it or dread it?

LOVE it! It brightens everything up on those dark and dreary winter days. The perfect Christmas morning would have huge white snowflakes falling gently all day.

8. Real tree or fake tree?

Fake.

9. What's the most important thing about Christmas for you?

Being with family of course.

10. What's your favourite holiday desert?

Oh my... it's impossible to choose just one!! Fudge or shortbread.

11. What tops your tree?

Stuffed Tasmanian Devil... Kind of a long story. It goes back to our very first tree. At the time I couldn't find an angel or star that I really liked. I should also mention that my husband has always been a huge Looney Tunes fan. McDonald's was giving away stuffed Looney Tunes characters with their happy meals and we had Taz. I don't remember who decided it should top our tree but it's been there for 15 years now.

12. Do you prefer giving or receiving?

Nothing beats giving. Well unless someone wanted to give my a million dollars, then I think I'd make the exception!

13. What's your favourite Christmas song?

Again I'm not sure I can name a fave... Music is background for me and I'm notorious for not knowing who's singing or the name of the song, despite trying to sing along. I'd like to say Christmas songs were different but not much. I know that I like to sing "We wish you a Merry Christmas"

14. Candy canes, yuck or yumm?

Meh... Well yummy if stirring a steaming cup of hot chocolate. or paired with chocolate. Otherwise, no thank you.

15. What do you leave for Santa?

Homemade cookies or other Christmas baking and milk. Carrots for the reindeer.

16. Do you have a favourite tradition?

Definitely stockings on Christmas morning. We meet up in the master bedroom and everyone opens their stockings in our bed. We usually try and get a family photo then too before the chaos that is opening gifts begins!

17. Do you prefer to shop on-line or at the mall?

I'm learning to love on-line shopping! No lines, no crowds, what's not to like?

18. Christmas letter or Christmas card?

Usually a Christmas photo card.

19. Favourite Christmas movie?

The Grinch who stole Christmas - animated version. In recent years The Polar Express is near the top of my list. Although I still really enjoy all the old traditional television specials that we have on dvd - nothing beats Frosty and Rudolph. There are probably others I just can't think of right now...

20. Favourite holidaymemory as a child?

I have to say that I have a lot of amazing Christmas memories from my childhood and I'm obviously terrible at picking favourites... It's a toss up between spending Christmas Eve with the Marquardts, going to church and singing carols... or... Decorating the tree was always a special family time. I used to make such a fuss about it only being done after my birthday! Now, I fight to get it up before!

Friday, December 23, 2011

Those first few days after Caelan was admitted back into the PICU were horrible and I was a mess.

Returning to work I knew I would have to prepare myself. I knew that I would most likely have to talk about what happened. The first couple times I talked about it I had a hard time. I would get teary eyed, I'd have to pause and gather myself before getting too choked up. As the days went on I separated myself from the story and was able to regurgitate it without getting too emotional. I hardened. It's a survival mechanism. I thought I had a handle on things and was getting stronger... Well, unless the
person I was talking to started to cry, then there was no holding back.

Then something happened.

I was surprised by a loving face from the past, shopping in a store, and I was completely caught off guard. When asked about Caelan, I immediately found myself choking back tears and was overwhelmed by the caring concern and admiration expressed.

It's not a bad thing.

It just made me realize that I'm in control at work - where I'm ready for questions and my guard is up.

But catch me with my guard down, somewhere unexpected and my emotions will run amok.

Thursday, December 22, 2011

We received these treats from some awesome folks who shared the recipe along with the treats. I knew immediately that these would be the perfect nummy for the girls to make. Darcy's been helping lots with the Christmas baking this year. Last night she was rolling out peanut butter balls to her hearts content! Tonight we're planning to decorate some gingerbread and make minty mountains.

The girls school had their Christmas Concert on Tuesday night. They moved the concert over to the high school since it would hold more people and the place was still packed. Despite the huge crowd I was able to wish many familiar faces a very Merry Christmas. As always it was a great show and always fun to go to... despite the fact that I was completely exhausted and not entirely looking forward to it. (Total Mommy confession right there) So happy that I sucked it up and went.

Wednesday, December 21, 2011

We had a Christmas get together last weekend and I've been wanting to get some of my pictures up since then. We participated in an activity that used to be an annual tradition but that we haven't done in years... Especially in this fashion. We made individual gingerbread houses with graham crakers!
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The table was all ready when we got there.

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Can you say excited?

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Getting so grown up...

Caelan's first day out of the hospital.

My masterpiece

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Thing One

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Thing Two - looks a little guilty, eh? Think she snuck a treat?

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My sis - check out that shingled roof!

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Her hubby - that's a ladder leaning on the house on the right!

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Mom's, complete with a shed at the back that you can't see!

I would say that we all had a really good time!

Oh and there were also a couple of these consumed! (Tons of other yummy goodies too!) Look how pretty and festive they are and so absolutely delish! Wish I could tell you what was in them, but Mom will have to post that below!

This is what the holidays are all about... No, not drinking fancy beverages! Spending some good quality time with family. xo

Sunday, December 18, 2011

The good/bad news is that it changes every two days as we slowly wean him. The first to go will be the ativan, then the methadone and finally the clonidine. We're looking at a couple months at least though...

Saturday, December 17, 2011

Late Thursday afternoon we heard rumours of possibly 3 nights a week of nursing. It completely raised our spirits and our hopes, but faced us with another decision. With three nights of nursing, do we take it and get out of the stinkin' hospital or do we hold out for more? When were they able to start? How soon before other nights were covered? So many questions... We both really wanted to have our family under one roof for Christmas yet we knew that we'd have to really stay on top of the situation to get other nights covered.

Friday morning we got even better news. We had a nurse for three nights next week! December 20, 21 and 23. Nothing available for 24 or 25 which is pretty much to be expected. Then starting on December 26th we'd have full coverage for Monday to Friday and alternating weekends!

I admit to being completely shocked. They really didn't inspire much hope for nursing at all. In fact they really didn't even give the impression they were working on it. Everyone at the hospital who wasn't CCAC would have words of encouragement and offer whatever they could, but the actual team who organizes the nursing support seemed quite hands off. They basically wished us good luck and told us to try going through our private insurance. We were infuriated! After many phone calls (to Managers, Directors and nursing agencies) we found out that they were in fact still working on it and meetings were taking place to get services in order as soon as possible.

All that to be said that we wasted no time getting Caelan's prescriptions in order and hightailing it out of there!! We brought him home last night to some very excited and surprised girls!! We were more than willing to suffer through a few nights on our own to have our boy home with us. Especially knowing that we have nursing just around the corner!! It feels SO GOOD to have him HOME!!!

I have to admit to being a bit disappointed that we won't be using the same nursing agency that we had in the past. We met some amazing nurses and am sorry we won't be having them back. I can only hope that we meet some new fabulous nurses who mean as much to our son and family as some of them. xo

Friday, December 9, 2011

Well, tomorrow will mark two weeks since Caelan was re-admitted back into the Intensive Care Unit at CHEO. Today, Caelan was moved up to the floor (5E). It's a little bittersweet as we were really hoping to be discharged from the PICU and avoid going up to the floor at all costs. Too many nasty bugs in the hospital at this time of year...

Caelan's doing really well but still hanging on to that last little bit of oxygen. I misunderstood yesterday as I thought that prior to the trache change he was off the oxygen but apparently not. They added a very small amount of oxygen to his humidity and that's what's keeping his sats up. They tried again last night to take that last little bit away and his sats immediately dropped and hovered between 88-90, which is unacceptable. With that little bit added he stays in the mid 90s.

In addition to his lazy breathing, the other thing keeping us in hospital is the lack of nursing available in the community. Our main nurse, who previously worked 4-5 nights a week with Caelan, had to look for work elsewhere when Caelan's trache was removed. I'm happy to say she found a great position but at the same time I'm so sorry that she's no longer going to be coming here. It took a long time to get that comfort level and continuity of care with our night nursing and I dread starting all over. Especially since we found out today that the agency that we used to get our nurses through is unable to support the schedule we've requested. That means that we probably won't be seeing any familiar faces at all and truly starting from scratch with new nurses from different agencies. I'm really not looking forward to it.

Thursday, December 8, 2011

Wednesday, December 7, 2011

They continued to wean Caelan's vent overnight so that this morning once he was awake we could stop it all together. It went pretty well. He certainly worked a bit harder but seemed to be adjusting. I get the impression that there was some concern as most felt he should have been able to wean quicker from the vent. (What else is new? Everyone thinking Caelan should be able to do things quicker!?!?) I got the idea that they thought he should remember how to breathe with the trache but Caelan likes to prove everyone wrong and needed to go step by step. I just think the vent makes it so easy and makes Caelan a bit lazy. Breathing is hard work, ya know! Anyway, he seemed to be doing well and we're just hoping he doesn't get tuckered out.

ENT came in to do the trache change early this afternoon and that went about as good as can be expected. They changed the trache from a 4.5 Bivona cuffed PED to a 4.0 Shiley PED - don't worry that's more for me than you! Basically they went down a size, however, I have to say it looks a lot bigger than the neonatal trache he had in before!! Probably a lot more appropriate for his size though...

The hallucinations continued today. My poor boy. At least they don't seem to be frightening him, so I guess that's a good thing. They do distract him though. He'll be focused on someone who's talking to him when all of a sudden something catches his interest up there on the ceiling... sometimes he reaches up to 'touch' or 'grab' whatever it is he is seeing... It's kind of funny, but not funny all at the same time.

His face is still expressionless and that really bothers me. At least it's familiar this time and I know that as the drugs get out of his system more and more of our Caelan will shine through. He's starting to move his mouth a bit, pulling his lips in, and sometimes scrunches up his eyes but that's about it. oh and he can pout like nobodies business!

Now, we wait - again. So much waiting...

I just hope that Caelan agrees that all is good and he's just as anxious to get home as we are!

Tuesday, December 6, 2011

Sometimes the time goes so slowly in hospital and other times you can barely keep up.

Those are our days at CHEO.

Lately the days have been slow, and it's been a nice change of pace from last week.

Caelan has been slowly waking up. It's a very gradual process as there are still lots of drugs in his system. We're working hard at keeping him from withdrawing but today he seems quite focused on the area above his bed... I'm wondering if there are some pink dancing elephants or singing Thomas trains up there. We've been told that if Pain Services have the doses correct he shouldn't be hallucinating but you'll have a hard time convincing me of that today. It's hard to watch your child suffer from withdrawal. Caelan doesn't seem too bothered by the shakes, and actually they seem much better today. I think it probably bothers Mommy more.

Yesterday was a pretty momentous day. Taking some significant steps in the right direction.

Caelan had his eyes open for a good chunk of the day. I'd have a hard time saying he was alert but definitely aware and awake enough to give some people the stink eye when they entered his room!

He managed to get rid of that foley catheter since he's been peeing like a racehorse. Most of the puffiness is gone although his tummy is still quite distended.

And hooray, hooray, the central line is out with no foreseeable requirement for regular blood work!! That means we were also able to stop the heparin solution that was going in. The clot he had was gone but there's such a higher risk for a clot to form with a central line they kept the heparin running at a much slower rate to prevent another clot from forming.

ENT came by and changed Caelan's trache ties. They were pretty gross since they were the same ones from surgery day. We're working on lowering Caelan's vent settings to hopefully have him completely off of it by tomorrow morning. Also on the schedule for tomorrow morning is Caelan's first trache change post op. It's a bit hard to believe that tomorrow will mark one week since Caelan got his tracheotomy back.

Today we finally touched base with Discharge Planning and they're hoping to have nursing all in place by the weekend. Sounds a bit like a dream to me... I think I've mentioned before that because we're already familiar with all the tracheotomy care there shouldn't be much delay in getting discharged after that first trache change. We're looking at a couple days of observation and some kind of weaning schedule for all those fancy drugs but then we're pretty much good to go!!

I'm trying not to get too excited about possibly being home by the weekend, but let's face it, who am I kidding?? I'm over the moon!! That would make me so super duper happy!!

Monday, December 5, 2011

Just over a week ago, had you asked me what the worst possible outcome of all Caelan's respiratory issues could be, I would have answered a tracheotomy. I felt that it would have made the past three months all for nothing. I couldn't imagine anything worse. We had so many plans and dreams for the following year and they all involved Caelan being trache free.

Then last Sunday happened and I got 'worse' in technicolour. It put everything in perspective for me.

A tracheotomy is not the worst thing ever. We were doing it and doing it well for the past three years. It works for Caelan. We know this. We've done this. We can do this again.

Yes it's scary. However, I'm hopeful that with his cords pinned open it will buy us a little time when doing trache changes. Instead of seconds, we should have minutes. Hopefully it won't send Caelan into a complete panic because we know he's got a pretty decent airway without the tracheotomy. We'll just have to wait and see though.

Along those same lines I'm hopeful that Caelan will tolerate having the speaking valve on his trache. That would be so cool! Not only would he be able to create more sounds and continue to work on the whole speaking thing, but it will be good practice for him if and when ever he decides it's time to decannulate.

See, I really think this is just Caelan getting his way, again. He's the boss. He knows what he likes and what he doesn't. I just simply wish he'd found an easier way to let us know that he wasn't ready for this big step. The good thing is going forward we'll be able to test out whether Caelan is ready for decannulation or not without having to go through any big surgery. Now that his cords are pinned and we're confident that his upper airway is good we'll be able to 'cork' or 'plug' Caelan's trache periodically to test his readiness for removing the trache. We can start slow and build up to longer periods of time so we'll know for sure before the next surgery if it's going to work.

The surgeons suspect that Caelan has a soft trachea - tracheomalacia, particularly in his lower airway close to wear the trachea branches off to the lungs. For Caelan this means that his trachea collapses in on itself as he inhales, probably more so when he's upset. They hadn't seen any strong evidence for it before. The good news is that as Caelan grows his trachea will strengthen and harden, so he'll basically grow out of this.

The down side of the tracheotomy is having to rely on nursing again. I shouldn't complain though, we've met some amazing nurses who allow us to sleep at night. I can only hope that we'll get some of them back. I've been pushing for Discharge Planning and CCAC to be contacted because we need to start that ball rolling if we want to get home soon. There's no delay for us to stay in hospital and learn trache care, we've done all that. It's just a matter of waiting on nursing after that first trache change.

Other than that, I'm just really sorry my little dude won't be able to swim in the tub like he was loving!

Sunday, December 4, 2011

Saturday, December 3, 2011

I'm happy to report that there isn't too much new news on the Caelan front. We've started the process of weaning the medication and slowly waking him up. He began his methadone yesterday and after his second dose we turned off the morphine. I admit to being terified with this plan. I understood that the methadone should take the morphine's place as far as pain medication but to just turn it off like that made me nervous. The methadone should also help with any withdrawal so I'm keeping my fingers crossed. They reduced his medazolam (versed) by 10% today and tomorrow will try and replace it with ativan which is another sedative but not a narcotic. Caelan slept most of today with brief periods of being slightly awake. He'd try to raise his arms and lift his head but it takes every ounce of his strength before he flops them back down exhausted. This evening he actually signed 'up' in the slowest of slow motions. When asked if he could try and open his eyes the best he could do was raise his eyebrows as high as can be, barely managing to open his eyes a slit. We're just at the beginning of waking him, he's still not ready to be taken off the vent yet. Still too sedated for that, but the slow steps are good. This morning they changed the vent settings to c-pap (not the same mask as when he was decannulated but the same pressures and oxygen levels delivered to the tracheostomy). Both Damian and I noticed a decrease in his puffiness, there's still a lot of swelling but he doesn't look like he's about to pop. There was some give to the skin on his hands and feet and they were no longer as tight. Nephrology is keeping a close eye on all his blood work (done twice a day through that lovely central line - no pokes) and have ordered another urinalysis. Renal function looked better today, a slight improvement from the past couple days. Oh, and all that poop protocal paid off BIG time! It feels like everything is moving in the right direction.

Thursday, December 1, 2011

Now that Caelan's trached, his airway is almost a non-issue. He's still vented and tomorrow they will begin to wean all the heavy narcotics and slowly start to wake him up. Should be interesting... Everyone seems to be psyching themselves up for the wild boy's return!

Infectious Disease has discontinued any wide ranging non -specific antibiotics after none of the various cultures grew anything in the lab. No infections have been detected. They'll remain on the scene but at this time have basically signed off.

Cardiology reported a strong healthy heart after the ultrasound (echo) done on Caelan's heart the other day. No concerns there.

Feeds were started again yesterday. We started really slow at a rate of 10mls/hour, increasing by 5mls/hour every four hours that he tolerated it to a max of 40mls/hour. Mid day today Caelan's heart rate increased and he seemed flushed and uncomfortable. We wondered if it was his gut getting reacquainted with his food and held the feed for a couple hours as well as beginning the poop protocol medicines. I didn't ask Damian how that was going this evening, so I'll go with no news is good news!

Caelan is retaining fluid. He's puffy PUFFY! He's accumulated so much fluid and is so swollen that there are no wrinkles or creases in his usually pudgy little hands and they look really painful. You can also see evidence of this in his face, his feet and his belly is all distended too. Heck, his belly button has almost disappeared! This is called edema.

If the blood flow to the kidneys is decreased by an underlying condition such as heart failure, the kidneys react by retaining salt. This salt retention occurs because the kidneys perceive that the body needs more fluid to compensate for the decreased blood flow. If the patient has a kidney disease that impairs the function of the kidneys, the ability to excrete salt in the urine is limited. In both conditions, the amount of salt in the body increases, which causes the patient to retain water and develop edema. (Source:http://www.medicinenet.com/edema/page2.htm)

There are lasix they can give him to help him get rid of some of this fluid but it's always a fine line as to when it should be done. A bit of a balancing act. This afternoon they finally went ahead with it and it seemed to be working well when I left (in that he was peeing out a ton).

Caelan's kidney seems to be the biggest priority today. With a solitary kidney it's always a concern but often takes a back seat. Over the weekend when Caelan went almost 48 hours with no real hydration, I mentioned my concern that this would be extremely hard on his kidney, but at that time a safe airway was a much greater concern. Not surprisingly in addition to the edema, blood tests show that the functionality of his kidney is deteriorating. He's also had some soft blood pressure readings. Blood pressure can also be indicative of a kidney in trouble.

First we wanted to determine if that blood clot in the general area of the kidney was contributing to the problem. The heparin (blood thinner) was stopped hours before surgery on Wednesday and wasn't planned to be restarted for a week post op to allow for healing. An ultrasound was ordered for this afternoon. I am relieved to say that the results from this ultrasound were received this evening and there is no longer any sign of a blood clot. They'll be monitoring the kidney very closely over the next few days and see if we can't get some better numbers. Nephrology has been made aware of his situation as well.

The last time Caelan was in the OR he coded and I'm terrified of hearing that PA system turn on again. It would be one thing if you heard the click and they started talking immediately, but there's always a pause. And that pause just about kills me.

Waiting. Waiting is hell at CHEO.

So Caelan is back in the OR and we are waiting. yah. sucks.

They're going to do a bronchoscopy. That's what they had planned on doing the last time before Caelan showed them his alternative plan.

The results of that bronchoscopy will determine their plan of action.

We were forewarned yesterday. We knew it wasn't going to be good because Dr. V (ENT) brought us into a room for our pre-op chat. A room is never good. If the conversation can't be handled at bedside you know it's going to suck. I really didn't want to go with him. We had a good idea where this was headed and it just sucked.

Basically, if they see something that can be fixed, something wrong, something that will explain all the airway trouble that Caelan's been having they'll fix it and we're all happy as can be.

Is this what they expect? No.

What's expected is that everything will look exactly how it did the last time. Everything will look great, his airway nice and open and all just like they want it to. Unfortunately that doesn't explain Caelan's difficulties in breathing. For that reason Caelan would end up with another tracheostomy.

We know that the decision to start this entire process of decannulation was primarily for our family life. The difference it would make is incomprehensible. For Caelan though, he went from having a perfect airway to an okay one. He's made it very clear that it just isn't working for him. His trache did work for him.

Now, I'm just trying to accept that.

In the interim though I'm really, really hoping that they just find some obstruction that explains all our troubles away.

Tuesday, November 29, 2011

Approximately a half hour after I got my update from Damian this morning all heck broke loose as Caelan decided he was done being intubated. He extubated himself and his oxygen sats plummeted. He couldn't have had better timing though. ENT was gowning up outside his room (he's in isolation so everyone needs to do this) to come in for an update and we had the head nurse in his room at the time. He was immediatly bagged to bring his sats back up and throughout it all his heart rate was stable. Within a minute his room was full. There were two ENT Doctors, with their respective residents/interns/students (one day I'll figure out how the learning system works), only one respiratory therapist, three of the PICU nurses and the PICU staff Doctor, the PICU fellow, the PICU resident and a bunch of others. It's quite amazing how many people can fit in his room.

Caelan had stabilized and they had time to prepare for the intubation. I'm happy to say that it went smoothly.

With this most recent turn of events, as we had previously expected Caelan's meds have been increased significantly. Both his morphine and versed infusions have been doubled. They're not holding back on the "rock" either - that's the drug that works kind of like a temporary paralysis and makes it so he can't move at all. He's also bought himself a new foley catheter and urology will be by to put that in as soon as they can.

Damian and I have both noticed that you can tell a lot about your child's health by which nurses you get. Don't get me wrong, they're all amazing... ok well 99% of them, every now and then you think you might have hit a dud but then it's probably more of a personality conflict than anything else. Anyway, when you spend as much time in the ICU as we do you recognize that the more critical cases get the more experienced or qualified certain specific nurses. For example when your child comes out of surgery and requires lots of hands on monitoring you get one of these nurses and as your child get better you won't necessarily get them anymore. This time around we're getting all the heavy hitters. It makes you feel good, knowing your son is in such capable and trusted hands, but at the same time it's awful to know that he's the one of the more critical cases in the unit.

Quick update: The plan for last night was a bit more hands off. Just sleep and we'll try not to bug you at all. It worked well from about 8pm -- 4am, after which he became a bit more restless and alert. He's eating through those happy meds like they're candy again. We expect they'll have to increase his infusions of both morphine and versed again today. He lost his foley catheter at some point due to a blockage but seems to be peeing well this morning. Here's hoping we don't have to put it back in.

Monday, November 28, 2011

ok... where to start. Monday was better than Sunday. Thank goodness. Not sure I could handle another Sunday.

First priority today was keeping Caelan stable. His two arrests yesterday are obviously a huge concern and remain a major focus. It is common practice after an arrest to cool the body down. By cooling the entire body down it slows the metabolic rate and conserves energy and betters the outcome post arrest. Or something like that.

In addition this morning Caelan began to spontaneously drop his saturation levels. Not something we want him to start doing. Several times his sats dropped suddenly and they had to bag him to bring them back up. It's suspected that this is because he is so sedated he isn't coughing up any of his secretions and as a result they pool and obstruct his airway. They're able to suction these out and it seems to solve the problem but definitely something we need to watch closely.

There was also another new concern that developed late in the day yesterday and worsened overnight. Caelan's right leg (the one with the arterial and venus central lines in it) was having extremely poor circulation. That's probably an understatement too. It was really bad. They couldn't feel a pulse in his foot and had to use a doplar to hear it ever so faintly. The were thinking that they'd have to remove the arterial line and called back in the cardiac surgeon for his opinion. I have to admit that he really wasn't impressed with the idea of them taking out the line that took him two hours to get the day before - in the most good natured of ways. He was concerned though that the leg wasn't being insulated from the cooling pad Caelan was on. There was no reason to cool the legs post arrest. He recommended that the legs be insulated and that the right leg be wrapped in warming blankets. This would increase the blood flow to both legs and hopefully help. I'm happy to say that it worked and his right leg and foot look remarkably better... Unfortunately for Dr. M, they still took out the art line later this afternoon.

There's always a risk for blood clots when there are central lines. Ultrasounds were ordered on Caelan's groin to check. At the same time an ultrasound was ordered for his abdomen/kidney as a precaution to just make sure everything looked alright there too. What they found was a blood clot in a vein carrying blood from his kidney. Actually I don't think they saw a clot specifically, more just a slowing down in the flow of the blood which is typical of a clot.

The blood people (don't remember the name for this team of doctors) were called in. They explained that the two ways people most commonly get clots are from either central lines or as a result of cardiac arrest. They understand the necessity for Caelan to have that central line but they'd like to see it gone as soon as possible. They've started Caelan on the blood thinner heparin. They chose that blood thinner because if for any reason he needed to go back to the OR they can stop it at anytime and within two hours it would be out of his system. Four hours after starting him on the heparin they'll do a blood test to determine if the dose is too high, too low or perfect and adjust it accordingly. It's because of this that they got rid of the art line.

I questioned today why cardiology hadn't been consulted when he'd had two cardiac arrests. I understand that they're confident that it was because of a lack of oxygen, however he still had to cardiac arrests and they're not 100% sure. They agreed. Cardiology came and did an ultrasound on his heart but I haven't heard the results yet.

Speaking of results, cultures have been taken from just about everywhere and we're waiting to see what if anything grows. Caelan's being treated with some wide ranging antibiotics but we'd like to be able to narrow that down a little and target something specific. The Infectious Disease Team has also been consulted and are now involved in this aspect of Caelan's treatment.

Endocrinology has also been consulted because sometimes repeated steroid use can cause some type of immune deficiency - so that instead of getting a little cold Caelan would always get the biggest, worst cold ever, the most extreme. Not sure I completely understand, but they've been consulted too.

Our ENT team came by several times today. At this point while he's vented they're quite hands off and will wait until things settle down a bit. It's expected that Caelan will have a bronchoscopy later in the week to check those cords. Dr. V feels that the airway really is big enough and we really can't laser any more away. However at the same time he understands that we can't continue all winter like this if every sniffle is going to send Caelan to the hospital. I hate to say it but there was mention of possibly re-traching to get him through the cold season.

This isn't going to be easy to type and probably not much easier to read...

Yesterday didn't get better before it got much, much worse. Caelan left for the OR to be intubated. He was nicely sedated and we weren't expecting him to be gone too long. We left for the café to grab a quick drink.

Imagine, it's a Sunday and the hospital is very quiet. Every parent's worst nightmare would be to hear a Code Blue call to the OR. That's what happened. We were both in shock and I think wanted desperately to believe that there must be someone else in for an emergency surgery on a Sunday afternoon. How awful is that? Then one of the PICU nurses is there beside us. I don't want to hear what she has to say and I don't want to go with her, but I do. We rush up to the operating room. We aren't allowed to see him yet. We must wait. We discover that chest compressions had to be done for about five minutes, but they've stopped... Then we're told he's stable. We can continue to wait there in the hall or go back and wait in the ICU. We choose to return to his ICU room. A resident comes to let us know that the chest compressions were started right away so they're expecting a good outcome. His heart stopped. He had no pulse. But they got him back. He's stable.

Finally he comes back to the ICU. We're able to give him a quick kiss before being ushered away. They were unable to get a central line in the OR and really need one. His blood pressure has been low and needs monitoring. They'll continue to work on the central lines in the ICU.

There's a second cardiac arrest. Chest compressions again.

We need those central lines. The ICU staff try and anasthesiology try without success. Eventually, our beloved Dr. M., the cardiac surgeon who repaired Caelan's vascular ring at three days old is called in. He works for two hours to get both an arterial line and a venus line by cut down. In between, Urology was called in to put in Caelan's foley catheter.

It was a very long day... and it's only three o'clock in the afternoon.

In the end Caelan had three IV's (one in his belly and each wrist) and three central lines (one in his left leg that has since been taken out and the two from cut down in his right). He'd received a blood transfusion and has been intubated. He's back on all those narcotics that we've worked so hard on weaning him from over the past two months - today would have been his last dose!

Saturday, November 26, 2011

Caelan is having major difficulty breathing and once again we are spending time in our home away from home... Caelan was admitted earlier this afternoon to the ICU at CHEO.

As long as we keep him calm and happy we're ok with a good oxygen blow by. He's not doing well without the oxygen though. He needs it. That may be because he's had several "episodes" today.

Episodes = MAJOR FREAK OUT

When he gets upset his sats drop into the 70s quickly, and often the 60s. For your information, you want sats of 100. The 90s are acceptable. In the 80s there are nurses there in minutes to ensure that oxygen mask is on his face. Anything lower than that and you've got a full team in there. When we arrived they couldn't get a reading better than 52. I'm not convinced it was accurate but that's irrelevant.

Teams don't really help Caelan calm down. The amazing thing is that in the ICU they've realized that, and basically the plan for tonight is to let us handle it until it's apparent that we need more help. They're going to keep their distance.

Personally, I think there is some underlying issue. I'm not convinced that this is just an airway concern.

I do understand that the airway issues do take priority and need to be addressed first... but this time we're not leaving until they look at everything. I think we're all getting really tired of coming back here every other weekend.

Friday, November 25, 2011

Caelan honoured us with two full nights sleep before going in for his sleep study last night...

I wonder if it had anything to do with this new sleeping position...

That's right, hand down his pants... Such a boy!

Update: Damian just walked in with Caelan. They discovered that sleep studies only last until 6 and then they decide you're done, lights on, everyone up, we're finished with ya! Sleep study went fine. Caelan slept well until around 5 this morning when he started working harder and his stats dropped. Usually they would have tried him on cpap to see if it would help but at that time in the morning they recognized that he'd just wake up. They've referred him to respiralogy and apparently they'll get him an appointment for later today. Like, I've said before, jumpin' right to the front of the line again!!

Thursday, November 24, 2011

Currently, Caelan's overall performance is indicative of the followingfunctional age ranges; it is important to recognize that Caelan's visualdeficits may impact his performance in some areas, despite the fact that heuses his vision very well.

Wednesday, November 23, 2011

Once again, it's already late and I'm just now logging on to the blog... my evenings seem to be passing by in a blur. Everynight I have all the best intentions to update everyone on our lives and how Mr. C is doing and everynight I seem to opt for going to bed instead. Well, you know after all that other stuff gets done... When I am on the computer I have Christmas on the brain, planning and listing and trying to organize my thoughts and find things on line.

As for Caelan... we are constantly questioning whether we should bring him back into CHEO. Last weekend we didn't because he seemed so well during the day and it was really only the nights that were concerning. He seemed to be teething, maybe fighting a cold too, so we didn't want to over-react.

Caelan had a follow up appointment with Dr. V (ENT) on Monday morning. This was another reason to delay going into CHEO, if we could have our concerns addressed without visiting the Emergency room all the better! We thought ahead this time and captured moments of Caelan's days and nights, good and bad times on video to show Dr. V.

We were given another 3 day prescription for the anti-inflammatory steroid, dexametasone. It worked really well last time and allowed all of us a great full nights rest. It took until last night for us to get the script filled and I just have to say I LOVE that drug!! I would like to have a lifetime supply. Caelan slept AWESOME! He didn't stir until just before 6 this morning!! It felt great.

The other outcome from that appointment was that a sleep study was ordered. We were told this would probably take a few weeks to schedule. Caelan somehow manages to get to the front of every line he's ever in and is all set to go in tomorrow night!! We were so surprised when we got the call. It's exciting to get things moving along quickly.

With that in mind, I e-mailed Dr. V this morning to discuss the lasting effects of the dex (new med). We're we ok to give it to him tonight and enjoy another blissful nights sleep or would the lasting effects throw off the sleep study tomorrow night? I was very disappointed to hear that we should avoid his dose for today if possible because he agreed that it would make the sleep study kind of pointless if he was still feeling the effects of the dex.

On Monday Caelan also had an appointment with audiology. He did really well with his tests but he's getting a bit too smart for them and next time we'll try the big boy testing. He still goes beserk when they put that little probe in his ear and I often wonder what he finds so offensive about it. They were only able to check his right ear but thought everything looked really good.

After a busy morning in ENT, Caelan headed over to OCTC to visit with his Blind Low Vision Therapist. BLV will be visiting his preschools to see if she has any suggestions or recommendations to help make his time there easier. We want to make sure that Caelan stays on her list, despite being a functioning deaf/blind child. It will make his transition in to school that much easier and keep everyone well aware of his requirements. At the same time - and this freaks me out a bit - she's going to contact the school about beginning to set things in motion for him entering kindergarten next year... Where does the time go?!!? And, yes apparently it will take that long!

Caelan continues to enjoy both his preschools. He attends the mainstream preschool every day of the week and the preschool at OCTC on Monday and Friday afternoons... Our most common feedback is that he's a real ladies man, always flirting with the girls... but that's for a later post!

Saturday, November 19, 2011

Caelan still sleeps in the living room. We felt that while he was going through withdrawal and trying to get a handle on this whole new breathing thing it wouldn't be the best time to change where he slept at home too.

Damian stays up to give Caelan some of his medications and start his overnight feed. We say he has the first shift.

I go to bed. I turn the monitor on at that time to make sure that I can hear Caelan. Usually I can hear Damain moving about and the television too but it doesn't seem to bother me. I fall asleep quickly and without much effort.

The funny thing is that I never notice when Damian comes to bed but I seem to know when he's there. After Damian comes to bed, if Caelan cries-coughs-whatevers I am out of bed like a shot and half way down the hall before Damian knows what's happened. However, I'm never aware of how Caelan's night went before then. I always thought he rested well because he never woke me up. I was wrong. Damian has spent many nights at the crib side calming our son and I sleep through it all.

Isn't it strange how a mothers instinct works? For me to be aware on some level that Damian's come to bed and it's now my turn to care for Caelan; to know that my shift has started.

This is how things have been going since Caelan was discharged back in October. Many a sleepless nights as our boy struggles with breathing the most then. We had a couple amazing nights when he was taking the anti-inflammatory steroid before the most recent surgery but since then it's been back to waking up at all hours every hour.

Last night however, it backfired. I awoke and came flying down the hall and into the living room, only to find Damian there. I'm not sure I was even really awake yet and it had me so confused I went back to bed to see who was there, if not Damian. There was nobody there. I thought maybe Darcy had snuck in, but nope, nobody. Just a malfunction in the system.

Tuesday, November 15, 2011

Yesterday when we met with Dr. V. (ENT) before Caelan went in to surgery, he asked if we had any last minute questions. I had only one. "When do we get to go home?" We all laughed it off... We had previously discussed the expected two nights minimum stay so I wasn't really looking for an answer, just throwing it out there.

However, when Dr. V stopped by this morning and asked how our night went I simply replied that it was relatively normal. Nothing different than what we've been dealing with at home since our last discharge. At that point he suggested that we could probably go home today - if I was okay with that!?!? Are you kidding me? Recovering at home is always better than recovering in hospital. With no new prescriptions to wait for and no follow up appointments to make our discharge was unbelievably fast and painless. We were out the doors by 10:30 this morning with Caelan waving bye and blowing a few kisses!!

Monday, November 14, 2011

Caelan is back in the Intensive Care Unit at CHEO but not intubated like I thought he might be. They used the laser similar to the last time in an attempt to widen his airway just a bit more.
The surgery went well and we're hopeful that this millimeter makes all the difference for him... and if not... Well, we'll cross that bridge when we have to and maybe even do this all over again!
For now Caelan seems to be comfortable - and on NO NARCOTICS!!! Oh, I was so happy when I heard this was the plan and even happier when he seemed to tolerate it. He is allowed to have Tylenol, so if he seems uncomfortable that's what he'll get, to start with anyway! Right now, we're well into our Mickey Mouse Clubhouse dvd and that seems to be all the 'drug' he needs. He's definitely not happy about being here however I do think he's starting to feel the same familiarity as we do in this place. Not sure how much I like that... I guess it is what it is...

Sunday, November 13, 2011

Darcy: Hey you named one of your webkins after there (with her mouth full)

Mom: Pardon?

Ryland: One of my webkins is named Georgia.

Darcy: I wonder if they'll see a devil...

It only took me a minute, but that was a minute longer than it took the rest of my family who are always thinking from left field... So I'm just curious, how many of you can follow along with this conversation??

Mix all ingredients for the cake together except for the butter. Slowly stir in the melted butter and pour into a greased 9×13 pan.

For the topping, mix all the ingredients together until well combined. Drop evenly over the batter and swirl with a knife. Bake for 28-32 minutes.

While cake is still warm, drizzle the glaze over the top.

I halved the recipe because let's face it a 9X13 pan of cinnamon roll cake just sounds dangerous.
It was super easy and DELICIOUS!!
I only wish I had taken pics for you... but you'll just have to make it yourself!

He coughed a bit around six this morning for the first time, which was prefect because that's when I have to give him his clonidine. At first I thought, wow I feel so refreshed! I think I'm up for the day, but I was able to crawl back in bed and fall back asleep quite easily. Yeah!

At seven I woke to the beep of Caelan's feed pump ringing off - Caelan was still sleeping...

Now I thought I really was awake and settled in on the couch -- to be woken up by Darcy a half hour later!!!

You never realize just how foggy you are on little sleep because you just get so used to it. It becomes the new norm. And then one day you get decent sleep and everything just seems so clear!!

Friday, November 11, 2011

I haven't been in the mood to blog lately... it doesn't happen often, but when it does even some exciting, eventful or funny moments don't snap me out of it. I think these slumps happen most often when I'm in mental overload. Any and all creativity gets pushed out of the way while I have so many other pressing concerns... and those concerns aren't always topics that I want to get into here. Having said that, here are some of the things that have been occupying my brain space lately...

Yes, I've been worried about Caelan. Waiting for a surgery date again has been weighing on my mind. What if he gets sick before we get him in for surgery. Should we have admitted him to get him into surgery faster? Did we make the right decision keeping him home? This list could go on and on ....

I've been worried about the girls. The attitude is just a flying and I feel I am constantly second guessing our parenting decisions... At the same time, frustration is at an all time high and patience nearing some all time lows and the girls are pushing every boundary and testing every limit. We're not enjoying having to argue about every.thing.every.single.night. Think I might have griped about this already...

The girls' progress reports came home from school. They're both doing good. Nothing exceptional, but meeting expectations. I find that Ryland is coasting along. I think she could really excel but we haven't been able to motivate her. I find she lacks ambition or initiative and I don't know how to teach her that. Heck, I'm not sure I have that!! I've asked for meetings with Darcy's teachers because I really feel that Grade Three is a critical year. It's amazing how much more homework they get this one year. She has more homework that Ryland in Grade 5!! It's a struggle to get her to complete it, and near impossible if you want it done neatly, which for some reason is a big deal to me.

Then the next minute, I think I'm too hard on them.

Work is work. I'm in the middle of training some time sensitive material. The majority of the training sessions are scheduled for next week and the launch date is November 20. I've been wondering how I will balance work next week and Caelan's upcoming surgery. It's been on my mind a lot this week, going over various scenarios without even having a surgery date. Making back up plans and alternative arrangements, all the while wondering how we will afford me taking this additional time off.

Money. Always on my mind... (Can't help singing that a la Willie Nelson!)

Then that gets me thinking about how we are going to manage everything when Damian does return to work. He extended his leave until the end of this year. There are so many things to consider and creating a schedule that will work for all of us is going to take some major juggling.

Then there are the things that evenI think I'm silly to be getting worked up about right now... like organizing for Christmas! This should be the last thing I'm worrying about - and I'm not really worried about it, but definitely thinking about it and aware of the fact that I'm not as organized as I like to be at this time of year. Or what about worrying about making birthday plans and birthday lists?!? Or baking for lunches? I'm telling you ... TOTALLY INSANE!

AND the worst of all --Worrying about whether I'm worrying too much!! Anyone else out there do that? Love when I start worrying about whether I'm worrying so much that my ulcerative colitis is going to flare! Just ridiculous - because then I can worry about what would happen if it did flare and ...

See it just never stops. My brain is in mental overload...

oh yah, and I almost forgot. Today we got a date. Caelan goes in for surgery on Monday at noon.

Tuesday, November 8, 2011

All weekend long, Damian and I knew that we were walking a bit of a tightrope with Caelan. We both were questioning whether it was time to bring Caelan back into the Emergency room. His breathing issues persisted. During the day he seems to handle life almost as we expected him too. Almost. As we expected, when he's exerting himself he has to work harder at breathing. Unfortunately it's taking him longer to recover than we thought it should and things that shouldn't create effort are. Like sneezing. It shouldn't take anyone 5 minutes to recover from a sneeze! His nights are worse, he's just not resting well. He's working really hard still. At the same time I want to make it clear that most of the time he's fine. 100% A okay. The part that concerns us is that he can seem to be fine one minute and then not so much the next. By Monday morning we had decided on a plan in hopes of staying clear of the Emergency Room. Damian stopped in at the ENT clinic while Caelan was in preschool at OCTC - just looking for a couple minutes to voice our concerns and hear an expert opinion. The receptionist turned Damian away. We know our Surgeon is a very busy doctor but he's also very caring and supportive. So much so, that he replied to the e-mail I sent that afternoon around 8:30 last night. He apologized for not seeing Damian when he was at the hospital and recommended that we bring Caelan in today or whatever day this week suited us. Damian and Caelan went in this morning and gave the Surgeon the opportunity to hear and see how hard Caelan has to work when he's upset/mad. It didn't take him long to decide he wanted to scope. The scope sealed the decision to operate again and open up Caelan's airway just a tiny bit more. He was hoping to be able to fit Caelan into the O.R. possibly tomorrow or at least this week. Unfortunately, he just called and advised that it looks like it will probably be early next week instead - unless of course Caelan worsens and we bring him in before then. He also called in a prescription to our pharmacy for a steroid to help keep the inflammation down and ease his effort in breathing until the surgery (if required). This surgery will be similar to the last one. It will be done by laser and he should be intubated for 24 hours. We'll keep you posted on when we get a specific date and time.

Saturday, November 5, 2011

Friday, November 4, 2011

Three years ago these boys' parents became fast friends in the most unlikely of places... the Neonatal Intensive Care Unit at CHEO. The boys followed their parents in a bond of friendship that will last a lifetime.

Then: December 2009

﻿﻿

Now: October 2011

Look at how much they've grown -- and that's the least of their achievements!﻿﻿